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How Long Does Healing Take! So Frustrated!


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#1 Maryw88

 
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Posted 09 October 2012 - 06:28 PM

Hi all,

I am so fed up. I am trying to be patient but I don't know what to do. I went VERY gluten free about 1 month ago but have been gluten light for 1 1/2 years (I thought I was gluten-free....I didn't know better). So, I haven't been 100% gluten-free for very long. I also figured out about 6 months ago I react to soy, and 2 months ago I react to caesin. I also have a problem with nightshades, vinegar, beans, corn, rice, quinoa. EVERYTHING! I seem to do ok with many leafy veggies and fruits. Red meat, fish, and shellfish. Thats about it.

I am currently trying to do the GAPS diet and am even reacting with that. Apparently chicken and chicken broth are intolerances as well. I can't handle the 1 tsp. of fermented veggie juice. I get D with that too. I have no idea what to do. This diet is terrible and not actually helping.

I have terrible stomach pains, burning pains. alternating C and D depending on the food. I get tingling and numbness in my mouth and arms if I eat an offending food. I can't afford to continue the intro to GAPS honestly and its not helping.

SO, what to do!? Do I just need to be more patient. How long did it take for those of you with similar issues to see changes? I really don't want to do GAPS or SCD. They are miserable and ineffective for me. Is it related to stress? I feel like I am so focused and stressed about all food. Any ideas or suggestions are welcome. I honestly do not know what I would do without this forum. It has been so nice to see others making this work and reading about your experiences.

Thanks everyone
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#2 shadowicewolf

 
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Posted 09 October 2012 - 06:47 PM

numbness in mouth indicates an allergy :/ Be careful please.

It takes time, some people take up to two years to get back to something "normal".

It took me over a year.
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#3 GottaSki

 
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Posted 09 October 2012 - 07:24 PM

I seem to do ok with many leafy veggies and fruits. Red meat, fish, and shellfish.

This is what you want to stick to for a while. Paleo recipes can help make things a bit more interesting. Who knew you could make a decent fried rice with cauliflower? I certainly didn't a year ago. There are many recipes for bread/muffins that can be made with almond or coconut flour.

I completely understand your frustration. Unfortunately it can take months and even years to heal. Give yourself time to process this. Progress can often be followed by set-backs. Try to be patient - you can't be patient all the time, but as you start to feel better it will become easier.

Try to hang with the foods you listed for at least six months before trialing any of the foods you know are causing problems. When you do trial them wait at least three days between trials to monitor for reactions. If you still react, remove them and trial at six month intervals.

Hang in there - your time completely gluten-free is very brief - adding all the other intolerance may make it seem like you have been at this forever.

I was able to do the broth of GAPS, but was unable to tolerate any of the fermented items so I've gone back to my basic diet of meat, fish, selected fruits and vegies. Don't forget healthy fats...avocado, nuts (if you can tolerate them), coconut oil, etc.

Oh...Small Intestine Bacterial Overgrowth (SIBO) can trigger multiple intolerances, so you might want to research or talk to your doc about it.

Hang in there!
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#4 deb445

 
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Posted 09 October 2012 - 08:11 PM

I think that Paleo diet will likely help. I am inclined to question diet, when healing is not happening at the rate you would expect. It sounds like you are pretty in tune with your body, and listening to the signals you're receiving. I don't remember now, the exact link, but there is a doctor ( Doc Osborne ? sp? ) who has some videos on youtube, and he discusses cutting out cereals and grains and legumes to attain optimal health. Perhaps worth a look, and it might provide you some freedom from pain. Freedom from pain, and freedom to make menu choices that serve you well. His website has some good recipes also. Best of luck!
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Gluten free for 5 years. Dairy free for years, but now OK with grassfed dairy.

Grain free for 2 years and now pain free.

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"Life isn't about waiting for the storm to pass, but about learning to dance in the rain..." ~unknown

#5 1desperateladysaved

 
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Posted 10 October 2012 - 03:48 AM

I have been grain free for since May. I know what you mean about the diet and confusion about healing. I use almond, coconut, buckwheat and bean flours instead of grains. I have used the Gluten-Free Society for recipes. That is Dr. Osborne mentioned above. Anyway I haven't found food that I don't really like. I thought I was reacting to chicken at one time, but I believe now that I don't. It is confusing, but I think it is just about healing. There isn't always an explanation in what I just ate, but sometimes my body is just making profound changes. I feel certain that mine still is.

Make sure you are doing all you can. I cut foods that bother me, take supplements, and only eat the food cooked at my food. Then hang on for the rollar coaster ride. Enjoy the changes as they occur. There is hope for better days.

Get well soon, *******

Diana
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#6 inducedjoy

 
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Posted 10 October 2012 - 07:35 AM

Hi all,

I am so fed up. I am trying to be patient but I don't know what to do. I went VERY gluten free about 1 month ago but have been gluten light for 1 1/2 years (I thought I was gluten-free....I didn't know better). So, I haven't been 100% gluten-free for very long. I also figured out about 6 months ago I react to soy, and 2 months ago I react to caesin. I also have a problem with nightshades, vinegar, beans, corn, rice, quinoa. EVERYTHING! I seem to do ok with many leafy veggies and fruits. Red meat, fish, and shellfish. Thats about it.

I am currently trying to do the GAPS diet and am even reacting with that. Apparently chicken and chicken broth are intolerances as well. I can't handle the 1 tsp. of fermented veggie juice. I get D with that too. I have no idea what to do. This diet is terrible and not actually helping.

I have terrible stomach pains, burning pains. alternating C and D depending on the food. I get tingling and numbness in my mouth and arms if I eat an offending food. I can't afford to continue the intro to GAPS honestly and its not helping.

SO, what to do!? Do I just need to be more patient. How long did it take for those of you with similar issues to see changes? I really don't want to do GAPS or SCD. They are miserable and ineffective for me. Is it related to stress? I feel like I am so focused and stressed about all food. Any ideas or suggestions are welcome. I honestly do not know what I would do without this forum. It has been so nice to see others making this work and reading about your experiences.

Thanks everyone


Unfortunately, the simple answer is yes, you just need to be more patient.

Healing from celiac disease is different for everyone. People go undiagnosed for years and the severity of it differs greatly from one individual to another. Healing can be anywhere from 6 months to 2 years, maybe even more, according to what my GI has told me. My advice is to stick to the foods you know won't cause a reaction, even if that means severely limiting your diet. The very sad reality of having celiac disease or any other food intolerance/allergy is that we can't just be "fed up with it." You will have this forever. It was hard for me to come to terms with it, but it's a fact of reality. It's frustrating and upsetting to not be able to eat the way you once did, and waiting for healing to happen can be lengthy and painful when you're still dealing with intense symptoms. However, nothing you do can speed things up. You can only continue to eat a healthy, COMPLETELY gluten free diet and wait for the healing to happen. I hope you find relief soon, it took me over a year of being completely gluten free to stop having symptoms. Even now, almost two years after being diagnosed, I still have symptoms every once in while (mind you, i had an extremely heavy case of celiac, and I had it for almost my entire life before finding out). With all of this said, patience is the key, and you can rely on your family and friends when the going gets tough. It's difficult to accept it and to be patient with your body, but it will pay off once you're healthy again.
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#7 GFinDC

 
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Posted 10 October 2012 - 09:05 AM

Hi Mary,

You are right, 1 month gluten-free is not very long. All the time spent gluten light would not stop the auto-immune reaction. Being totally gluten-free should stop it in time though. Your small intestine is around 20 to 22 feet long, so that is a lot of damaged tissue to heal. Making it easy for your gut to digest food is a good idea. You can do that by sticking to foods that don't cause symptoms for now, and taking pro-biotics and digestive enzymes. Avoiding sugar and spicy foods can help also. Cooked veggies are easier to digest than raw.

Avoiding dairy is also helpful, if you aren't doing that already. Some people find changing their hair care products to gluten-free versions helps. Remember to check your vitamin pills and meds for gluten also, and avoid cross contamination.

The early part of the diet change is about healing and learning to eat gluten-free. There is also a lot of change going on in your gut as it tries to heal the damage. That can involve bacterial imbalances and the probiotics and avoiding sugar can relieve that some.

A simple diet is the best way to go, and whole foods only. Adding in gluten-free baked goods after you are feeling better is ok, just go slow on it.
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#8 T.H.

 
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Posted 10 October 2012 - 10:57 AM

The bowel stuff, yea, you may just need to be patient. It can take a long time to get better.

The tingling and numbness? That needs a new approach, because that does not sound like gluten intolerance or celiac disease but rather an allergy.


I would go get checked with an allergist, ASAP. Also, I'm sitting here trying to think of something that can causing tingling and numbness but would cause you to react to multiple foods. Better to have one allergen than many, yeah?

1. Corn - this is in freaking everything. It is often in vinegars, sprayed on tomatoes as a ripening spray, on rice with vitamins added, in dairy as vitamin fortification, and so on. However, meat can sometimes be a problem, too, so that seems like it might not quite fit.

2. Sulfites - this is hard to get tested for, because it doesn't test well with allergies. The big kicker for this one is wine. If wine makes you very sick, that may be a sign that sulfites are the problem. Processed corn is often soaked in a sulfited bath, so many of the corn products are ALSO sulfite issues. Fermented foods have sulfite as a natural by-product produced by the yeast, so some sulfite sensitive folks get very sick from vinegars. This one is a problem of mine and I used to describe how I felt sometimes as this tingling 'heavy' feeling in my arms and head. I felt very dizzy and spacy too, but the symptoms for this vary. (good website: http://holdthesulfites.com/)

3. I wonder if yeast could be an issue, or SIBO (bacterial overgrowth)? I don't know as much about these two, but I think both can actually make it so that fermented foods do not do so well. Might be worth looking at, anyway. I don't, however, think these cause burning or numbness, although an ALLERGY to yeast might cause that. That's not very common, but I know of one gal who has this and it was pretty awful. If you DID have this, you would be very prone to extremely nasty yeast infections anywhere in the body, and even native yeast levels on produce could have an affect.

4. I DON'T think you are having fructose malabsorption, problems with tyramine, histamine intolerance, or salicylate sensitivity. I don't know a lot about these, to be honest, but from what I remember, these almost all involve a lot of fruits and veggies causing problems, which doesn't seem to be the case for you so much.


One thing you might want to check, just in case? For some of the foods that you have a problem with, it might be worth growing them yourself. When I was reacting to SO many things, I eventually discovered that it was a contaminant ON these things that was the problem. Growing them myself, I was able to eat them. So that might be worth exploring. :-)
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T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive


#9 dilettantesteph

 
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Posted 10 October 2012 - 11:17 AM

It took me about 4 years to heal/develop my diet. I don't know if I would have healed faster if I had gone on the diet I am now on right away. I do know that if I go back to eating some of the things I used to eat, I get sick again. Periodically I'll try one of them just in case. I just kept reading and informing myself about trace gluten sources and eliminating more things. Eventually I got to a place where I was healthy enough to determine whether or not I could tolerate something by doing challenge/elimination studies of everything I ate. I try to only change one thing per week so that I will know what might be causing any problems I come up with. I keep track of everything. My health is so much better now that it has been worth every bit of time and effort.
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#10 Maryw88

 
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Posted 10 October 2012 - 03:04 PM

Wow, Thank you everyone! I know 1 month doesn't sound like much but this has felt like a long time. I thought I was doing everything right, then oh...that has gluten. Thought I was doing it right...oh cross contamination. This has been a steep learning curve.

I will try to be more patient. I think I may just have to accept that my body will not be quite right for sometme. In the meantime I am going to stick to a simple diet. I am also going to look into the intolerances/allergies mentioned. I think something else is going on. All alcohol makes me sick actually.

The most confusing thing here is that I believe these are new allergies. I have a true wheat allergy as well but when tested nothing else showed up. (2 years ago). However, I have developed these intolerance or allergies (who knows what they are) over the last year. Maybe another trip to the allergist is in order. I have looked into leaky gut and believe this may be a part of my problem.

Thanks for letting me vent and talking me down. As you all know, this is incredibly frustrating and lonely! I feel insane! So, thank you! I will take your advice and at least be more patient.
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#11 GottaSki

 
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Posted 10 October 2012 - 03:52 PM

I'm glad you found this place to vent - we all have a time or two ;)

Just wanted to add a note. I have severe intolerances that have all been identified or gotten worse in my time gluten-free. I have tested negative to ALL food allergies several times in both blood and scratch tests. During the past year my reactions became much more allergy-like. I even had anaphylactic reaction to sunflower seeds when I trialed them.
My primary ordered epi pens for me immediately after that severe reaction. I have had other serious reactions - have not had to use an epi pen yet, but do have them at home, each of my cars and my purse. These reactions escalate, so even if you don't test positive for an "allergy" ask your doc to prescribe epi-pens - far better to be safe.

I hope you never have a reaction that severe, but did want you to be aware of the possibility. My family and I were caught completely off guard when my reaction became that extreme - and they are very familiar with my reactions to food.

Again, welcome - ask questions - feel free to vent - take it a day at a time and you will improve - I just can't guarantee it will be quickly.

Hang in there!
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#12 ncdave

 
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Posted 11 October 2012 - 03:25 PM

Your small intestine is around 20 to 22 feet long, so that is a lot of damaged tissue to heal.

According to dr oz there"s enough area inside the small intestine to cover a tennis court, now that"s a lot of healing! Sounds like your on the right track Mary, it does take a lot of patience, but you"ll get there. I'm not well yet, but i will say after 9 months, my last 2 weeks have been wonderful.
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gluten free 12/11
dairy free 2/12
soy free 10/12
corn free 10/12
nightshade free 10/12

#13 L.J.

 
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Posted 13 October 2012 - 11:00 AM

Hi Maryw88!

I too have some similar issues as you do. GottaSki gave you some great "starter advice". :D

I am still a Newbie here, but have found amazing information! For me, I stick with vegatables and "freshly cooked" meats that I make--restaurants are a scarey place for me still! :D

I also have severe food allergies--and I agree with ?? (darn, who said that info?)to watch out for allergic reactions! The mouth tingling is a definite signal to me. I too avoid milk and nuts!

Maybe try thinking of it this way...with the money you save on not buying "poison foods" (my name for the foods I can't eat :) you can afford to buy an extra steak--and then you will have "leftovers" to eat the next day! Imagine that! You get to eat steak more often. Yum! :P

Hang in there and keep using this amazing site! You will get more information and support than you can believe!!! :D

Hi all,

I am so fed up. I am trying to be patient but I don't know what to do. I went VERY gluten free about 1 month ago but have been gluten light for 1 1/2 years (I thought I was gluten-free....I didn't know better). So, I haven't been 100% gluten-free for very long. I also figured out about 6 months ago I react to soy, and 2 months ago I react to caesin. I also have a problem with nightshades, vinegar, beans, corn, rice, quinoa. EVERYTHING! I seem to do ok with many leafy veggies and fruits. Red meat, fish, and shellfish. Thats about it.

I am currently trying to do the GAPS diet and am even reacting with that. Apparently chicken and chicken broth are intolerances as well. I can't handle the 1 tsp. of fermented veggie juice. I get D with that too. I have no idea what to do. This diet is terrible and not actually helping.

I have terrible stomach pains, burning pains. alternating C and D depending on the food. I get tingling and numbness in my mouth and arms if I eat an offending food. I can't afford to continue the intro to GAPS honestly and its not helping.

SO, what to do!? Do I just need to be more patient. How long did it take for those of you with similar issues to see changes? I really don't want to do GAPS or SCD. They are miserable and ineffective for me. Is it related to stress? I feel like I am so focused and stressed about all food. Any ideas or suggestions are welcome. I honestly do not know what I would do without this forum. It has been so nice to see others making this work and reading about your experiences.

Thanks everyone


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